8 years

stub1969
stub1969 Member Posts: 978 Member
edited August 7 in Kidney Cancer #1

Hello again! I had my scans yesterday and everything (kidney-wise) came back clear. Just click on my icon to view my history. They did see a little blip in my small intestine and will follow up with GI. I'm glad to see "Bay", "Donna", "Jazzgirl", "Lobbyist" and others still providing wisdom and support. Sorry, I've been gone for so long. Life is just busy. My youngest daughter just graduated from high school and was recruited to play basketball in college. We'll be putting some miles on to watch her play:)

Comments

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #2

    Hi Stub! Great news on your scans! Congratulating your daughter! How exciting! Thanks for checking in.

  • stub1969
    stub1969 Member Posts: 978 Member
    #3

    From one 2016 to another….Thanks for the comment. I do appreciate it. Just to touch base again, I read through your profile and see you've had one heck of a ride. I, too, had my thyroid taken out because of cancer. Mine was found during my baseline scans for my kidney lesion. Surgery was a month after my kidney partial.

    I go in for a PET scan the first week of November to see if that spot in my small intestine lights up. They did compare this spot to scans from two years ago and from three years ago. It wasn't visible two years ago (they think it was blocked somehow), but it was present on the scan from three years ago. Back then it was the same size as it is now, which is less than a centimeter. The doctor describes it as "tiny". So, if it does light up, I think I'll have some options.

    Again—thanks, Deanie. You take care!

    Stub

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    #4

    Hi Stub! Yes I've been gone a long time as well and have not kept up with my news. I also had my 8 year mark in June with good reports - always a relief. Because of my one-kidney status I still have yearly scans and alternate CT one year and ultrasound the next, with chest x-ray thrown in. Biggest news is that my wife and I moved to Ireland in April for at least a year and hopefully longer; working with the Church of Ireland in Tralee area - if anyone on the discussion board is in the area would love to chat. Many new things to learn here - healthcare being a big one. I will continue to make a US trip each summer to meet with the doc who did my surgery (well, that and jazz camp, retreat, and see friends and relatives there.) Tomorrow I'm doing a charity swim for the local Cancer Recovery Center and hope to volunteer there down the road. Take care All!

  • Allochka
    Allochka Member Posts: 1,069 Member
    #5

    Loooove such news! Congratulations!

  • Galrim
    Galrim Member Posts: 315 Member
    #6

    Sounds like good news. Just out of curiosity, how come you are being followed up for 8 years? I think in most parts of the world if youre NED after 5 years they stop? (Im 14 years NED now and havent been checked for RCC relapse since 2015).

  • Allochka
    Allochka Member Posts: 1,069 Member
    #7

    Hello Galrim, great to hear you are NED! May I answer instead? My husband, who was Stage 1 grade 1 also stopped being followed by docs after 4 years or so (I don't remember). But as some studies show that kidney cancer could come back even after 10 years or later (veeeery improbable, but still), husband decided to get abdominal ultrasound and chest x-rays every 2 years for my piece of mind. He pays himself, but these scans are very cheap in our country, and he has insurance which covers it later. He is now 9 years NED. I guess he will stop testing in a year or 2, if all fine.

  • Galrim
    Galrim Member Posts: 315 Member
    #8
    https://csn.cancer.org/discussion/comment/1718033#Comment_1718033

    Ah. Understood. I misread the OP as his 8 year scan was a part of the standard follow-up. Which is why I wondered. True, if you have mRCC it can come back even decades later. but the odds are extremely low.
    As for your husband btw, with a Fuhrman grade of 1 you have a better chance of winning the lottery than him having a relapse :-)

  • Allochka
    Allochka Member Posts: 1,069 Member
    #9

    Thank you for encouraging words! :-) Fingers crossed :-) I always worry much more than husband about it :-) But actually I did read here that some doctors officially follow up for 10 years, even Stage 1-2 patients. Guidelines of different cancer associations vary greatly, go figure… We are from Europe, European association kinda recommends longer follow ups. But they are the only ones.

    I am sure that since you are 14 NED you definitely have nothing to worry about!

    Stay NED!

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    edited September 20 #10
    https://csn.cancer.org/discussion/comment/1718032#Comment_1718032

    Hi Galrim I will answer as well. I am also an 8 year survivor and at 5 years my surgeon said I had a choice of going to year-and-a-half checkins. I chose to keep it at yearly because it is convenient for travel (avoids severe winter weather) and I feel less anxious if I check in every year. He did say that at 5 years it is sometimes common to stop appointments or lengthen time between them. Since I was born with only one kidney and got cancer in it, he agreed it is good to be cautious. It helps that I have very good insurance and am able to travel each year to see my oncologist/urologist/surgeon. Take care ~

  • stub1969
    stub1969 Member Posts: 978 Member
    #11
    https://csn.cancer.org/discussion/comment/1718032#Comment_1718032

    Good question, Galrim. I'm being watched at Mayo in Rochester, Minnesota. This is what they laid out for me. Part of it could be that I had positive margins in my surgery. This year they did ask if I wanted to skip year 10, but I decided to have a final CT at that point.

  • stub1969
    stub1969 Member Posts: 978 Member
    #12
    https://csn.cancer.org/discussion/comment/1717885#Comment_1717885

    Good to hear from you, Allochka. I'm glad everything is going well for your husband and the rest of your family.

    Stub

  • stub1969
    stub1969 Member Posts: 978 Member
    #13
    https://csn.cancer.org/discussion/comment/1717716#Comment_1717716

    My dear friend, Jazz—so good to hear from you! Glad things are going well with you with your RCC. That BIG news is awesome. One of these days my wife and I will get to Ireland. If you're still there when we go, I'll make it a point to stop and see you and your wife.

    Let me know when you're back in Iowa this summer.

    Wishing you only the best!

    Stub

  • stub1969
    stub1969 Member Posts: 978 Member
    #14

    Well, here is my update. I went in yesterday for my PET scan and everything is clear. Nothing "lit" up…whew! The GI doctor believes the little "blip" that was caught on my CT is a dilated blood vessel and is nothing to worry about. So—really good news.

    My next and final CT with chest x-ray will be in the fall of 2026.

    Take care—Stub

  • jazzgirl
    jazzgirl Member Posts: 243 Member
    #15
    https://csn.cancer.org/discussion/comment/1718836#Comment_1718836

    Hey Stub! Yes definitely check in with us would love to show you both some of our favorite places. Right now we're hoping this is long term - we have to renew our visa each year for a while, and everyone says "get through a winter first." Will keep you posted…

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